עמותת עלמי

Our Vision

Our vision and goal is to promote the development of an interdisciplinary model of research, in order to find therapy for CONDBA disease and other orphan diseases

According to estimation there are in Israel about 500.000 patients who suffer from rare diseases, and more who suffer from complex diseases.

In the USA and Europe there are 20-30 million patients.

Due to the rarity of these diseases there is little research or interest of the pharmaceutical companies , thus the patients, many of which are children , fall between the cracks in terms of accurate diagnosis and treatment.

Medicine divided to different expertises is limited in its ability to diagnose and treat patients that do not present classical symptoms or that the appearance of their disease is a-typical.

In this journey with my daughter, from the first appearance of symptoms until the diagnosis given years after, I found that there is a strict barrier between the bodies of knowledge, Science and Medicine.

After having discussions with many researchers, I believe that a creative interdisciplinary round table , for which scientists and physicians from obvious areas such as Genetics, Neurology and Biology, along side areas which may seem surprising such as Zoology, Cancer research , Geriatric and even Electronics – could promote innovative thinking, the kind needed for rare and common disease as well,such as Parkinson’s disease and Alzheimer’s.

Discoveries related to specific syndromes can have an immense impact upon understanding other neurodegenerative diseases as well as upon common symptoms such as insomnia, weight problems etc.

The interdisciplinary model can be a breakthrough in terms of diagnosis , therapy and channeling of resources .

Further more we are also looking for methods of treatment that are not specific to the genetic fault but can influence the progression of the disease, the symptoms and quality of life .

RESEARCH

Students, researchers and physicians interested in being involved in interdisciplinary research of a rare and orphaned disease please CONTACT US for more information.

DONATIONS

Elya's only hope and that of millions of other children around the world who suffer from rare diseases is private initiative and funding.

Your donation will be directed to support leading minds and hearts, from the best universities, labs, and hospitals, who agreed to join this journey, we hope to extend the circle of investigation and develop simple and promising methods to bring healing and ease to the dis-ease.